Hello dear friends!
There are tons of blogs out there about what not to say to people who have chronic and invisible illnesses- I even wrote one myself a while back. And while these are extremely helpful and can lead to some great discussion among the general public, I think perhaps the other side of the coin is missing in action. If you point out all the things not to say, but don’t offer any replacements or suggestions, it can stall out the dialogue and create even more silence among us. And I am a huge fan of dialogue! Communication is key to understanding the variety of human experiences, developing empathy for one another, and building a safer and more peaceful world.
So with that being said, I thought I’d write about a few things that are actually helpful to say when you find out that someone is struggling with an invisible illness. I know it can be awkward and clumsy to find the right words at times, and I know that this milieu has decayed its fair share of friendships and potential friendships. And the truth is, people who are living with these kinds of challenges need a strong support system, so if a handful of well-thought-out words can help bring us closer, then they’re definitely worth blogging about!
Let’s jump right in with probably the numero uno, most important thing you can say:
In our world, we are often met with doubt- from doctors, from healers, from our friends and family, even from the general public. This constant state of scrutiny and feeling like we have to “prove” the validity of how we feel is both exhausting and extremely lonely. These three little words are potent and powerful, and help us feel validated and connected. You may not be able to understand (after all, you can’t spend a day in our bodies), but you can offer support and acceptance when we tell you our experiences.
You may have no qualms about believing us- it may totally make sense to you and seem like a no-brainer, but sadly many people that we interact with don’t feel this way. So it means a lot to actually hear it spoken out loud (or written) from someone we value in our lives.
The blame game is a HUGE one we all play with ourselves on a daily basis. Thoughts race in and out of our minds, flinging “what if”s with lightning speed. What if I hadn’t taken that job? What if I hadn’t taken that trip? What if I hadn’t been so sleep deprived? These self-blame labyrinths can be tangled with things large and small. I find myself questioning not just my major life choices (what if I hadn’t ignored my intuition?), but the mundane as well (what if I hadn’t made myself build that bookshelf?). We feel totally and completely responsible for the state of our health, even when we intellectually know that’s not the case.
Hearing it from you can be incredibly comforting and validating, because we also can’t help but worry that everyone else blames us for getting sick too. It’s hard not to, as our society tends to pick apart sick people and find some fault or error to explain why they’re sick.
Many people with severe illness or disability live a life of housebound solitude, which can be toxic to their self-esteem and social standing. On the same hand, most of those people desperately wish they could go out and rejoin their friends; to have the energy to go to dinner, to concerts, to parties. I know I am incredibly lucky that I have the amount of health that I do and I am able to attend the occasional social event. But generally it takes ten times the effort for me to get up and get ready and that’s not even counting the utter exhaustion that many social events can cause.
Sometimes we just need to lay on the couch in our sweatpants, but we’d rather not do it alone again. Occasionally the offer to just come visit and not make it into a huge deal can make us feel valued and alive.
Those of us with health challenges are notorious for canceling plans at the last minute (I’ve been known to do this) and it can be hard to dissolve the initial reaction of disappointment or betrayal. We are constantly worried about upsetting people, for losing friends, for missing out, and to actually cancel something means that we really do not have the energy left to spare. Perhaps we had to push ourselves to meet a work deadline earlier that day, or have to save up enough energy to make our important doctor’s appointment in the morning. You never know. And every day is a little different for us- we may make plans when we’re feeling pretty good, but a few days later we’ve hit a slump and have to bow out.
Please don’t take this personally. Just be forgiving and willing to reach out again.
I definitely struggle with not feeling like I’m doing enough to heal myself, and everyone else like me that I’ve talked to has expressed the same thing. Another form of self-blame, the idea that your efforts aren’t enough is basically saying you’re still sick because you’re not doing enough or you’re not doing it right. What a depressing and defeatist mindset! Yes, perhaps in some people’s eyes we are flailing and failing. If only we’d try this diet, or this doctor, or this medication, then we’d actually be making a good effort.
But in the end, we all are doing the best we can (whether you’re ill or not), and it helps to feel like we have you in our corner. Sometimes it’s just better to resist the urge to make suggestions or give advice, and just simply support us in the efforts we are making.
Granted, you should only say this if you actually mean it, but if you are willing and able to lend a hand, this is one of the most important phrases to give. There are days when I would absolutely kill for someone to just come over and help me cook dinner, or pick up something at the store for me, or just listen to me vent. Standing alone in front of a pile of tasks is often overwhelming, even to the point of tears, as is sitting alone on the couch swamped in fear and worry.
A tip here: utilize your strengths and habits. If you’re a wonderful listener, offer to do that. If you are out and about running errands, offer to pick something up. If you are a fit and healthy neighbor, offer to help with yard work or house cleaning. If you’re a healer/therapist of some kind, offer a mini-session now and again. If you’re a great cook and you have lots of leftovers, offer to bring some over. It may not seem like a huge thing to you, but you never know how much time, energy, and stress you have saved your friend.
There are quite a few variations on this theme, but the end goal is all the same: to help us to feel seen. 90% of our struggling is done in private, behind closed doors, and most people (even our spouses or roommates) have no idea what it’s really like to struggle day in and day out with something so deeply draining like CFS, MS, Lupus, and a myriad of other diseases. It’s hard not to feel completely beaten down on the bad days, and still completely invisible even on good days- it’s hard to find people to share our ups and downs with. This stuff is hard work. And it can make us weary, both physically and mentally, and even more isolated.
It’s great to hear sometimes that you see us. You value and admire our resilience, and you acknowledge the pain and difficulty that we deal with. And sometimes these words can give us the extra boost we need to get through the next day.
I hope that this gives you perhaps a few more tools to interact with us, and maybe a small dose of confidence to encourage you to not shy away from conversations with us. People living with chronic or invisible illnesses are human too, and we crave authentic connection and support just as much as everyone else. It can be confusing and difficult to know how to behave around us, and that’s completely understandable! Especially if you care about us and feel powerless to relieve our suffering.
And of course, if you are at a loss for words, or can’t think of anything useful to say, it’s always helpful and appropriate to say:
Sometimes that’s just enough.
~ Hoping you feel as well as possible ~